Chandelier
Senior Member (Voting Rights)
Easily, I only post selected news that offer new insights as all those reports about individuals with LC become quite repetitive.
News from Germany
- Thread starter TiredSam
- Start date
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- germany me/cfs news regional thread
as a German I can confirm it’s more like a couple every day -if you count smaller media and newspaper as well.
it does it’s part for acceptance and recognition- but neurologists like Deutsche Gesellschaft für Neurologie still won’t listen and there are still people that have never really heard of ME/CFS.
Chandelier
Senior Member (Voting Rights)
From Twitter, machine translation:
You have ME and are highly positive and resilient, so people say, “It can’t be that bad—perhaps you are also trying to take advantage of some of the benefits of the illness.”
You are psychologically suffering as a result of the situation, so people say, “You see, it really is psychological after all.”
You object to therapies that could leave you bedridden, so you are labelled aggressive.
You inform healthcare professionals about the current state of the scientific evidence, so you are said to have a fundamentally negative and critical attitude.
You die as a result of harmful treatment, and people say, “No one could have known any of this since 1969—it is all completely new.”
This is how stigma works.
But this is also how manipulation works.
#MECFS is one of the few fields in which psychopaths, narcissists, and sadists can still torture people to death without having to fear the slightest consequences.
Chandelier
Senior Member (Voting Rights)
There will be a series of Zoom presentations on ME/CFS organized by the Pankow Public Library in Berlin:
Window to the World: Living with ME/CFS
Marina Weisband has been living with ME/CFS since 2020. As a mother, social entrepreneur and politically engaged person, this represented a major disruption to her life. As a psychologist, however, she has worked out how, with the help of grief work, self-efficacy, creativity and humour, she could not only come to terms with her illness, but also build a life in which she is happy today—despite all the limitations and frustrations.
Date: 23 September 2026
Time: 6:00–7:00 p.m.
Guest: Marina Weisband
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292573
Window to the World: Medical Insights—Understanding Long COVID and ME/CFS
with Dr Christian Gogoll
Are you living with Long COVID or ME/CFS and looking for well-founded medical answers? In this one-hour Zoom session, Dr Christian Gogoll will present important insights from his book and answer your questions afterwards. Join us from the comfort of your own home for an accessible space dedicated to knowledge, exchange and orientation.
Date: 30 September 2026
Time: 5:00–6:00 p.m.
Guest: Dr Christian Gogoll
Moderator: Daniela Süß-Borowsky
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292732
Window to the World: Investigating Long COVID and ME/CFS
As part of our “Window to the World” event series, we welcome Martin Rücker, who will read from his book Anna und das Biest. The book sensitively portrays Anna’s view of the world and offers a personal insight into her experiences and perceptions. The series is aimed at people living with Long COVID and ME/CFS, as well as anyone interested in the subject. There will be an opportunity to ask questions and engage in discussion afterwards.
Date: 7 October 2026
Time: 5:00–6:00 p.m.
Guest: Martin Rücker
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292927
Window to the World: Individual Support for People Living with ME/CFS
with Silke Horn
What support is available to people living with ME/CFS when their need for assistance increases? This talk provides information about outpatient care, integration assistance and personal assistance, and outlines ways of arranging individual support at home—for greater security and self-determination in everyday life.
Since 2012, Sozialhummel has been committed to enabling people with disabilities and chronic illnesses to live self-determined lives. Its services include personal assistance, outpatient care, integration assistance and social counselling. Silke Horn is the managing director of the Sozialhummel group and has spent many years focusing on individual care options, particularly for people living with ME/CFS and those with high support needs.
Date: 19 October 2026
Time: 5:00–6:00 p.m.
Guest: Silke Horn (Sozialhummel)
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=293032
Window to the World: Muskeln aus Plastik—Reading and Conversation with Kay Matter
On living with Long COVID / a chronic illness, gender identity and the art of reinterpreting one’s own body: Kay Matter will read from his book Muskeln aus Plastik and share personal, candid perspectives.
As part of our “Window to the World” series, we create a safe space for dialogue, diversity and new perspectives—without the need to travel, and with the opportunity to join comfortably from your sofa or bed via Zoom.
Date: 27 October 2026
Time: 5:00–6:00 p.m.
Guest: Kay Matter
Moderator: Daniela Süß-Borowsky
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=293041
Marina Weisband has been living with ME/CFS since 2020. As a mother, social entrepreneur and politically engaged person, this represented a major disruption to her life. As a psychologist, however, she has worked out how, with the help of grief work, self-efficacy, creativity and humour, she could not only come to terms with her illness, but also build a life in which she is happy today—despite all the limitations and frustrations.
Date: 23 September 2026
Time: 6:00–7:00 p.m.
Guest: Marina Weisband
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292573
Window to the World: Medical Insights—Understanding Long COVID and ME/CFS
with Dr Christian Gogoll
Are you living with Long COVID or ME/CFS and looking for well-founded medical answers? In this one-hour Zoom session, Dr Christian Gogoll will present important insights from his book and answer your questions afterwards. Join us from the comfort of your own home for an accessible space dedicated to knowledge, exchange and orientation.
Date: 30 September 2026
Time: 5:00–6:00 p.m.
Guest: Dr Christian Gogoll
Moderator: Daniela Süß-Borowsky
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292732
Window to the World: Investigating Long COVID and ME/CFS
As part of our “Window to the World” event series, we welcome Martin Rücker, who will read from his book Anna und das Biest. The book sensitively portrays Anna’s view of the world and offers a personal insight into her experiences and perceptions. The series is aimed at people living with Long COVID and ME/CFS, as well as anyone interested in the subject. There will be an opportunity to ask questions and engage in discussion afterwards.
Date: 7 October 2026
Time: 5:00–6:00 p.m.
Guest: Martin Rücker
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=292927
Window to the World: Individual Support for People Living with ME/CFS
with Silke Horn
What support is available to people living with ME/CFS when their need for assistance increases? This talk provides information about outpatient care, integration assistance and personal assistance, and outlines ways of arranging individual support at home—for greater security and self-determination in everyday life.
Since 2012, Sozialhummel has been committed to enabling people with disabilities and chronic illnesses to live self-determined lives. Its services include personal assistance, outpatient care, integration assistance and social counselling. Silke Horn is the managing director of the Sozialhummel group and has spent many years focusing on individual care options, particularly for people living with ME/CFS and those with high support needs.
Date: 19 October 2026
Time: 5:00–6:00 p.m.
Guest: Silke Horn (Sozialhummel)
Moderator: Alexandra Steidel
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=293032
Window to the World: Muskeln aus Plastik—Reading and Conversation with Kay Matter
On living with Long COVID / a chronic illness, gender identity and the art of reinterpreting one’s own body: Kay Matter will read from his book Muskeln aus Plastik and share personal, candid perspectives.
As part of our “Window to the World” series, we create a safe space for dialogue, diversity and new perspectives—without the need to travel, and with the opportunity to join comfortably from your sofa or bed via Zoom.
Date: 27 October 2026
Time: 5:00–6:00 p.m.
Guest: Kay Matter
Moderator: Daniela Süß-Borowsky
Online event: Register for the event and you will subsequently receive the Zoom link to participate.
Register here
Categories: Information events, Health, Environment, Readings, Talks
District: Pankow
https://www.berlin.de/land/kalender/index.php?detail=293041
Chandelier
Senior Member (Voting Rights)
55min interview with Annabelle's mother on the YouTube channel @Dr.Claudia.Kanitz:Long Covid: Annabelle fights ME/CFS
STORY TIME: Long Covid: Annabelle kämpft gegen ME/CFS - Jetzt streamen!
Annabelle muss die meiste Zeit im Bett liegen. Seit einer Corona-Infektion ist sie dauerhaft krank. Turnen, Schule, draußen spielen: Sie wünscht sich zurück, was ihr früher Spaß gemacht hat.www.kika.de
Annabelle has to be in bed most of the time. Since a corona infection, she has been permanently ill. Gymnastics, school, playing outside: she wishes back what she used to enjoy. What can Annabelle help? Together with her parents, she is committed to more research. With an avatar, Annabelle sometimes participates in class. But she usually can't make it. Even her friend can rarely come to visit because it is too exhausting.
(I think this is a kids' TV channel)
Chandelier
Senior Member (Voting Rights)
Rolle der Kinderschutzhotline bei ME/CFS, Post Covid und Post Vac erkrankten Kindern
Sehr geehrte Damen und Herren, im Rahmen des Informationsfreiheitsgesetztes bitte ich um folgende Auskünfte: 1. Protokolle, Schulungsunterlagen, Verfahrensanweisungen, Leitlinien und Kriterienkataloge die bei der Kinderschutzhotline verwendet werden, um Mitarbeiter zu schulen, die Beratungen...
fragdenstaat.de
Chandelier
Senior Member (Voting Rights)
„Lebendig begraben“: Dreifache Mutter leidet jahrelang an rätselhafter Krankheit
Eine Mutter erzählt, wie eine mysteriöse Krankheit ihr Leben ausbremste und sie dennoch zurückfand. Ihr Neuanfang beginnt fern der Familie – in einem dunklen Zimmer auf dem Land.
www.schwaebische.de
"Buried alive": Mother of three suffers for years from mysterious illness
A mother recounts how a mysterious illness slowed her life down, yet she found her way back. Her new beginning starts far from her family – in a dark room in the countryside.
PANORAMA • READING TIME: 10 MIN.
From Ines Markgraf
Published: 22.09.2026
Good 1900-word article about an initially severe/very severe pwME.
She is mother of two children and she had to move away from Berlin back into her home village to live a quiet and isolated life.
She's now somewhere between moderate and severe, able to do some activities outside but not without paying the price.
She still lives separate from her family as she requires a lot of peace and quiet.
The article paints a realistic picture of what it means to suffer from ME/CFS.
ME/CFS Research Foundation‘s 5€ campaign which they started in december 2025 now almost collected 1 Million € of donations since the start of 2026.
In December 2025 they collected almost 300.000€ if I remember correctly.
That’s not all their donations from 2026, only the 5€ campaign.
In December 2025 they collected almost 300.000€ if I remember correctly.
That’s not all their donations from 2026, only the 5€ campaign.
Attachments
OrganicChilli
Senior Member (Voting Rights)
Unfortunately, their recent funding programme has been underwhelming. Their genetics project is interesting, but the rest is inflammation, autoimmunity, and endothelial dysfunction. They are easily in a position to fund the next stage of SequenceME or a buspirone challenge replication, but may lack awareness or the timing wasn't right?
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I think they are always open to new ideas.
But currently they are only funding German projects. They have something like a funding roadmap/ stage system and currently they are not yet in the stage where they are funding european projects.
that is the goal for the next stage I think.
Update: Förderstrategie 2026 der ME/CFS Research Foundation - ME/CFS Research Foundation
Die Förderung biomedizinischer Forschung zu ME/CFS und Long COVID ist das erklärte Ziel der ME/CFS Research Foundation seit der Gründung vor vier Jahren. Mit unserer aktualisierten Förderstrategie für das Jahr 2026 konkretisieren wir unser Engagement für bessere Diagnostik und potenzielle...
mecfs-research.org
But we could collect ideas how to maximize German potential, not just with ME/CFS research foundation but also with the National Decade.
Personally I think the project that is done with the PEDNET -LC consortium is very interesting too (Strat4 Pais IIRC).
Attachments
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OrganicChilli
Senior Member (Voting Rights)
I think that's a good idea.
Chandelier
Senior Member (Voting Rights)
Google Translate Link.
The Severe and Very Severe ME Research Registry: Participation, Research & Networking
Biomedical ME Research in the Home Setting
Enabling people with severe and very severe ME to participate in research studies
The Severe and Very Severe ME Research Registry has predefined eligibility criteria. Please check whether you meet these criteria before registering.
Information Sheet on the
Severe & Very Severe ME Research Registry
Every level of severity deserves a place in research!
Severe & Very Severe ME Research Registry
Every level of severity deserves a place in research!
The Severe & Very Severe ME Research Registry gives people with severe and very severe ME from Germany, Austria, and Switzerland the opportunity to participate in research through home visits.
Who can register? All of the following criteria must apply:
- People aged 14 or older with severe or very severe ME from Germany, Austria, or Switzerland
- Due to their illness, no longer able to leave their home to participate in a study
- An existing risk of severe or prolonged PEM/PENE as a result of travel, examinations, or other study-related exertion
- Unable to leave their home due to their illness because doing so would result in a substantial worsening of their condition
- Leaving their home only for unavoidable appointments and only with extraordinary medical measures, such as sedation, transport while lying down, etc.
Non-binding guidance: Bell score of 20 or below
Why is registration so important?
Various subgroups and the scientific significance of different levels of severity are currently being discussed in ME research. People with severe and very severe disease courses represent a patient group that has received very little research attention to date.
In order to understand the full spectrum of the disease, research must not be limited to mild and moderate cases. Every registration brings us one step closer to appropriate research!
Planned steps of the registry
Step 1:
- Recruitment of people with severe and very severe ME
- Target: 600+ registrations
- Current status: 300 registrations
Step 2:
- Promoting the registry among researchers
- Receiving research proposals
- Connecting people affected by ME with research projects
All information about the registry:
www.severe-me-registry.de
For enquiries:
severe.me.registry@pm.me
Instagram:
@severe_me_research_registry
Register now and help ensure that severe and very severe disease courses are finally included in research!
Registration link:
https://umfrage.severe-me-registry.de/858633?lang=de&newtest=Y
Initiated by: Arista Heß, herself severely affected
Scan & register!
Data protection
Registration is carried out באמצעות a self-hosted LimeSurvey installation. All data is stored on servers operated by Hetzner Online GmbH in Germany and processed in accordance with German data protection law.
Registration is non-binding and does not constitute an automatic offer or guarantee of participation in a study. The registry is privately operated and non-commercial.
Registration Process
1. Check the requirements
Participation is only possible within the framework of home visits.
2. Complete the form
Personal details and information about the illness are provided.
3. Review of the information
The registry administrator reviews the submitted information.
4. Possible follow-up questions
If necessary, a gentle and considerate approach will be taken to make contact.
5. Inclusion in the registry
Following a successful review, the person will be included in the registry.
After Registration
1. Submission of a study proposal
A research team submits its proposal to the registry.
2. Study review
The research question, study procedures, and potential burden on participants are reviewed.
3. Information sent by email
People who are generally considered suitable will be informed by email.
4. Decision by the registrant
Any contact and participation are always voluntary.
Chandelier
Senior Member (Voting Rights)
Neues bundesweites Register erfasst erstmals systematisch assistierte Suizide
Wie häufig finden assistierte Suizide in Deutschland statt? Welche Motive und Lebenssituationen stehen dahinter? Welche Erkrankungen und Versorgungssituationen spielen eine Rolle? Und unter welchen Bedingungen kommt es zur Durchführung? Auf diese Fragen gibt es in Deutschland bislang nur...
www.lmu-klinikum.de
Google Translate link.
WORLD SUICIDE PREVENTION DAY - 10.09.2026
New nationwide register systematically records assisted suicides for the first time
How frequently do assisted suicides occur in Germany? What motives and life situations lie behind them? What illnesses and care situations play a role? And under what conditions do they take place? So far, there are only insufficient answers to these questions in Germany in the form of systematic data.
This is about to change: Since September 1, 2026, the nationwide "Register for Assisted Suicides (RegAS)" has been online. The RegAS portal allows for the structured and anonymized recording of assisted suicides that have taken place in Germany. For the first time, the register creates a standardized, nationwide database to better understand the practice of assisted suicide. The data collected includes socio-demographic and clinical characteristics, the motives of the individuals involved, the role of the person assisting, and the process and circumstances of the assisted suicide.
My reaction too. It's really shocking to see how this industry works at times.
Chandelier
Senior Member (Voting Rights)
Aktionskalender ME/CFS_Long Covid_Post-Vac
aktionskalender.org
There has been a CME for ME/CFS in July and about 700 healthcare professionals signed up for it.
The presentations have been recorded and uploaded to YouTube.
Among the speakers was also Professor Scheibenbogen.
https://youtube.com/@mecfs-paivs-selbsthilfebw?si=pByUWHj74OXWYpVW
List of presentations:
Chandelier
Senior Member (Voting Rights)
Just saw a recommendation for the free audiobook section of ARD Sounds.
www.ardsounds.de
Die besten Podcasts der ARD und des Deutschlandradios
Ob Hörspiel, Wissen, Dokumentation oder Comedy – entdecken Sie die Podcast-Vielfalt der ARD und des Deutschlandradios. Täglich neue Episoden & Empfehlungen.
Chandelier
Senior Member (Voting Rights)
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